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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually start with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a